The Whitworths of Arizona, bringing science to you in everyday language.

Friday, September 20, 2019

2019 ILBDC: What Are Biomarkers?

This presentation at the 2019 International Lewy Body Dementia Conference by Dr. David Irwin of the University of Pennsylvania offered a thorough overview of biomarkers. He started out with this "pre-test."

A biomarker is:

a) Paper and pencil cognitive test
b) Survey/questionnaire
c) Blood test
d) Spinal fluid test
d) Physical exam finding
e) Neuroimaging
f) Sleep study- Electrophysiology
g) ALL OF THE ABOVE

Yes, the answer is "All of the above." In the past, I had thought biomarkers were mainly those expensive and involved imaging tests that physicians use improve their diagnosis things like dementia. And they are that. But it turns out that many of the things we've experienced in doctor's offices and hospitals for years can be defined as "biomarkers."

According to the National Institute of Health, a biomarker is "a characteristic that is objectively measured and evaluated as an indicator of normal biological processes, pathogenic processes or a pharmacologic response to a therapeutic intervention."

More simply, a biomarker is anything that can be used to objectively measure an aspect of one's health or a response to treatment.

Biomarkers are used in two ways. The first is to assist in diagnosis (measure an aspect of one's health) The second is to track the progress of (a response to) an illness or its treatment.

Blood pressure is a biomarker we've used for centuries measure and track the health of our heart and circulatory system. Doctors can also use it to track the body's response to various drugs, such as those for high blood pressure. In the same way, the blood tests used to diagnose certain cancers can be used to track the body's response to treatment later.

With DLB, the type of LBD that starts before motor symptoms are evident, biomarkers are used diagnostically and as trackers.  Diagnostically, they can facilitate an earlier diagnosis. The hope is that eventually, we will be able to use biomarkers to find Lewy bodies so early that they can be eliminated before they spread. They also help the diagnosing doctor differentiate DLB from the different dementias. Biomarkers can even firm up a choice of DLB vs. Parkinson's with dementia, the "other" LBD. As trackers, they help the doctor track progression and decide upon the best treatment.

The three most used DLB biomarkers are DAT (dopamine transport) imaging, I-MIBG scanning of the heart, and sleep studies. DAT measures the movement of a protein used to move dopamine in and out of a cell. Less activity means that DLB is more likely. I-MIBG is a radio-active tracer used to measure damage to the nerves that control automatic heart function. This damage can signal the presence of LBD. Sleep studies are used to identify the presence of REM sleep behavior disorder, or active dreams.

Another biomarker that you might come into contact is a short questionnaire that a primary doctor--or even care partners!--may use to identify the presence of enough LBD symptoms that a referral to a specialist is appropriate. This may or may not include the "clock test," where a hand drawn clock is used to judge concept and hand-eye coordination.

Naturally, biomarkers are also used with Alzheimer's disease (AD). There is more and more effort on identifying AD prior to symptoms. This will likely happen before it does with LBD, but many of the same techniques can be used for other neuro-diseases such as LBD, once they have succeeded with AD.

We aren't through talking about what happened at the LBD Conference yet! Next week, we will tell you about the LBDA's Research Centers of Excellence and what they can do for you.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Saturday, September 14, 2019

Participating in Research: Part 2

Last week's blog was the first how of a summary of a presentation by Dan Kaufer MD, of North Carolina at the 2019 International LBD Conference. It discussed the value of and need for clinical trials and their structure, design and purposes. This week we dig a little deeper and discuss the components of clinical trials and what you should know before you participate.

Clinical Trial Components:

Institutional Review Board (IRB)
  1. Board members: doctors, researchers, members of the community
Tasks:
  • Review, approve, and monitor all clinical research studies
  • Ensure that research risks are minimized and are reasonable in relation to any potential benefits
  • Review the informed consent document to make sure it is understandable and clearly describes the risks and benefits of the study
Informed Consent

Provides potential and enrolled participants information about a clinical study
  • Intended to help a person make an informed decision about the risks of, potential benefits of, and alternatives to the study
A person must sign an informed consent document before participating in a research study
  • Signing the document and providing consent is not a contract
  • Participants may withdraw from a study at any time
Clinical Study Research Plan

A clinical study is conducted according to a research plan (protocol) that is designed to answer specific research questions and safeguard the health of participants and covers the following :
  • Reason for conducting the study
  • The number of participants needed
  • The schedule of tests, procedures, or drugs and their dosages
  • The length of the study
  • What information will be gathered about the participants
What Do You Need To Know?

Many studies have strict criteria for the study and the subjects. You need to know the following before you sign up.

Study Basics
  • What is being studied?
  • What is the therapeutic rationale for this treatment?
  • What do we know about possible treatment effects?
Subject Eligibility
  • What is the target population?
  • Inclusion criteria: age, diagnosis, severity, etc.
  • Exclusion criteria: age, severity, prohibited medications, other medical conditions, etc.
Treatment Arms (components)
  • What are the possible interventions (e.g., treatment vs. placebo) that I might receive during the trial
  • How will it be determined which intervention I receive (for example, by chance)?
  • Who will know which intervention I receive during the trial (blinding)?
Other Medications
  • Can I take my current treatment(s)?
  • Are there any medications that I am not allowed to take?
  • Are there other treatment options available?
Study Requirements
  • What will I have to do to participate?
  • Do I need to have a study partner?
  • What tests and procedures are involved?
  • How often will I have to visit the hospital or clinic?
  • Will I have to stay overnight?
  • How long will the study last?
Cost/Payments
  • Who will pay for my participation?
  • Will there be an issue with my insurance company due to experimental vs. standard care?
  • Will I be reimbursed for other expenses such as travel?
  • Who will oversee my medical care while I am participating in the trial?
  • What are my options if I am injured during the study?
Follow-Up I Termination
  • What if I decide to withdraw from the study?
  • What type of long-term follow-up care is part of this trial?
  • If I benefit from the intervention, will I be allowed to continue receiving it after the trial ends?
  • Will results of the study be provided to me? (e.g., which treatment arm, brain imaging data, genetic testing, etc.)?
Now, go find a clinical trial and join up! Just be aware that if getting a new experimental treatment is your ONLY reason for signing up, you are likely to feel cheated if you end up in the placebo group. If you look at the whole process as a way of helping the researches find out more about LBD, then getting to be in the non-placebo group can be a wonderful, but unexpected bonus to an already good adventure.

References/Resources 
Dan Kaufer MD, North Carolina
Food and Drug Administration:
Lewy Body Dementia Association
Comprehensive Clinical Trials Site
Center Watch. Overview of Clinical Trials.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, September 6, 2019

Participating in Research: Part 1

Learning more about LBD and how to treat, or even cure takes more than researchers. It also takes people like us to step up and volunteer to be subjects. More clinical trials are ended for lack of subjects than for any other reason!  Most of the information below is from a presentation by Dan Kaufer MD, of North Carolina at the 2019 International LBD Conference.

How does clinical research differ from clinical care?
  • Clinical research involves human subjects who participate in a study protocol designed to answer a question that contributes to medical knowledge
  • Clinical trials are meant for research, not to administer proven effective medical care.
  • Clinical research is the only legitimate pathway for developing new, safe and effective treatments for a medical disorder or condition.
Types of Clinical Research Studies

Observational:
  • May be done prior to or in conjunction with a clinical trial
  • Evaluates a health-related outcome
  • Evaluating one or more tests aimed at identifying or diagnosing a particular disease or condition
Interventional:
  • Clinical trial
  • Evaluates or compares one or more therapeutic interventions for safety and potential benefits
Reasons for Conducting Clinical Studies
  • To evaluate one or more tests aimed at identifying or diagnosing a particular disease or condition
  • To explore ways to improve the comfort and quality of life through supportive care for people with a chronic illness
  • To find ways to prevent the initial development or recurrence of a disease or condition
  • To evaluate one or more interventions for treating a disease, syndrome, or condition
Drug Development Process for Human Disease

Preclinical to Clinical:
  • Average time: 12 years
  • Average cost: $1-2 billion
  • Potential treatment identified based on laboratory studies (in vitro)
  • Proof of concept studies in laboratory animal models (in vivo)
  • Human testing - clinical
Clinical Testing

Phase 1.
  • Less than 100 subjects.
  • Average time: 2 years
  • Assess safety for use in humans?
  • Usually tested in normal human subjects.
Phase 2.
  • 100 - 1000 subjects
  • Average time: 2 years
  • Assess the safety and potential effectiveness of an experimental therapy for a specific medical condition.
  • Ex: What dose or delivery method provides the highest benefit and least risk.
  • More then one Phase 2 trial exploring various aspects of a drug may run concurrently or may run consecutively, which can greatly increase the time for this phase.
Phase 3.
  • 100s - 1000s (a.k.a. "pivotal" trial)
  • Average time: 3 years
  • Typically Involves testing 1or more doses of the experimental therapy In a randomized, placebo­ controlled, double-blind study to determine If the therapy is safe and effective.
  • Randomized: Subjects are assigned by chance
  • Placebo-controlled: Subjects receive either active treatment or placebo
  • Double-blind: Assignment is not known by either the subject or investigators
Therapeutic Interventions: Regulatory Tiers
Once a therapy has passed Phase 3 Clinical Trials, it must be approved by the FDA before it can be marketed.

FDA Registered Therapies
  • Pharmaceuticals (chemically based substances)
  • Requires clinical research protocols that must meet high standards for scientific merit (e.g., double-blind, placebo-controlled), safety, and ethical conduct
  • FDA reviews data from the Phase 3 trials (and possibly others) for regulatory approval.
  • FDA approval can take over 2 years, but can be fast-tracked, with results in as little as 6 months.
Vitamins and Herbal Supplements
  • Derived from natural vs. chemical sources
  • Not intended to treat specific medical conditions 
  • Homeopathic treatments are in this category. While they are often designed to treat specific symptoms, they are not FDA governed.
  • Rigorous testing for efficacy or safety not required
  • Testing and quality control depends on company standards
Therapies for Neuro-degenerative Disorders

Symptomatic
  • Palliative
  • focus of treatment is alleviating one or more signs/symptoms associated with the disease or condition
  • potential benefit of treatment is cumulative
Disease-modifying
  • focus of treatment is to alter the underlying disease process in a way that slows down or halts progression, or reverses decline
  • potential benefit of treatment may be cumulative
Where Are Clinical Studies Conducted?

Academic research centers
  • conduct a variety of different research studies
  • perform clinical trials
  • provide clinical care
Community-based clinical trial centers
  • primary focus on performing clinical trials
  • little or no provision for clinical care
Private practices
  • primary focus is clinical care
  • also conduct clinical studies
Well, you may know a lot more about clinical trials than you did but there's more to come. I know I do! But, be sure to read next week's blog before you consider volunteering. While it is a great thing to do and much needed, you need to understand what you are getting into! Next week, the last half of this series will discuss the components of clinical trials and what you should know before you participate.

References/Resources
Dan Kaufer MD, North Carolina
Food and Drug Administration
Lewy Body Dementia Association
Comprehensive Clinical Trials Site
Center Watch. Overview of Clinical Trials.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, August 30, 2019

2019 LBD LBD Conference: Netflamapimod, an Experimental Drug of Promise.

In April, 2019, EIP Pharma announced that they had funded a program to explore the use of neflamapimod as a treatment for DLB. Phase 2 clinical studies are expected to start this year. Ongoing Phase 2 studies trials with early Alzheimer's are expected to provide results in early fall. The drug inhibits an enzyme involved in a process that appears to increase nerve inflammation and turn a natural protein, alpha-synuclein, into toxic Lewy bodies.

Even if this new drug shows promise, it is still a long way from being available for use. Phase 2 trials can last up to two years and only about a third of experimental drugs pass these tests. In addition, drugs may undergo more than one Phase 2 trial. So far, neflamapimod has had four. Each phase of a clinical trial takes about 2 years, but as with the trials of neflamapimod for Alzheimer's, there can be more than one in each phase which may or may not run concurrently.

Netflamapimod has been in Phase 2 clinical trials for use with Alzheimer's since 2015. The four Phase 2 trials brought about enough positive reports to instigate Phase 2 trials for other diseases, including DLB, to start in 2019. If everything goes perfectly, it may be ready for FDA approval in five years--in about 2024. (2 more years for the new Phase 2 tests and 3 years for Phase 3).

FDA approval can be a long drawn out process taking 2-3 years. The FDA has been fast tracking drugs to treat serious conditions like dementia. The skipped steps do decrease the assurance of a drugs effectiveness but it can shorten the approval process by many months. Our experience is that most people living with LBD and their families would be willing to accept that danger so as to be able to try the drug sooner.

However, once the drug is on the market, it still won't be easy to get. Doctors may also hesitate to prescribe them until Phase 4 clinical trials, which occur after a drug is on the market, are complete. These Phase 4 trials test new drugs that are in public use for any problems that might have been missed in the previous trials. Even if your doctor is willing to prescribe it, insurance companies provide limited coverage for new drugs that are usually a lot more expensive than existing drugs to start with.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, August 23, 2019

2019 LBD Conference: People Living with LBD

The Caregiver Track conference highlighted people living with LBD and their experiences. Last week, our guest blogger, Rosemary Dawson, told us about Susan Williams and what a wonderful advocate for LBD she has become. Today, she tells about the some of the other speakers.

Laura Turner Seydel is a national environmental advocate and daughter of Ted Turner. There has been nothing in the media about Ted Turner and his Lewy journey since his interview with Ted Koppel in September 2018 during which he demonstrated that he knew very little about LBD, likening his case to a "mild case of Alzheimer's ... but not nearly as bad ... Thank goodness, I don't have that.”

Laura told a different story. We appreciated her candor in describing her father's Lewy journey and the information she shared that shows that his family has a better understanding of LBD than he expressed in that interview. Our hope is that Laura will be another vocal LBD advocate and that her presentation at the conference will be the first of many efforts by Ted Turner's family to bring awareness of the disease that afflicts him.

Ted was diagnosed only a few years ago but Laura tells how he experienced RBD (REM sleep behavior disorder, or Active Dreams) way back when he was still married to Jane Fonda. (They were divorced in 2001.) Ted, who celebrated his 80th birthday in 2018, appears to be doing fairly well. Although he tires easily and has problems with short term memory, he stays active. He particularly wants to continue to ride horses on his Montana ranch although his parkinsonism makes this difficult and dangerous. This desire motivates him to do yoga every day (with his private yogi). The yoga strengthens his core and helps his flexibility, which allows him to ride and has other benefits as well.

Don and Cynthia Kent were very effective in presenting what life is like for those who live with LBD and for their spouses. They illustrated the challenges, but also the rewards and demonstrated that people can live well with Lewy. Don Kent is a retired lawyer from Tyler, TX; Cynthia is a retired judge who still practices law. They shared their life pre-Lewy, the early symptoms, the diagnosis, and how they are trying to live well with Lewy. Don was candid that before he had a diagnosis, he had thoughts of suicide which sent them to the Mayo Clinic where he was diagnosed with LBD. These two short videos are both well worth watching., one of Don talking about his LBD journey and one about the couple's activities in making Tyler a dementia friendly community You can also read about them in this article. https://tylerpaper.com/lifestyle/health/tyler-attorney-don-kent-faces-lewy-body-dementia-diagnosis-with/article_2f7ba26d-78f7-5413-bbd7-6fe279abc786.html and

https://www.youtube.com/watch?v=9eL9qfMZW48&feature=youtu.be

https://www.kltv.com/2019/02/22/tyler-becomes-only-second-texas-city-recognized-dementia-friendly-community/

This was my third time meeting Don and Cynthia. They are doing so much to spread awareness and educate people. Truly inspiring that they are doing this while facing the ups and downs of life with Lewy.


Robert Bowles is a retired pharmacist from Georgia. Since being diagnosed with LBD at the age of 64, Robert has been tireless in his efforts to bring awareness to LBD, to support those living with Lewy, and to bring all of the LBD stakeholders together to tackle the many facets of LBD. Robert talked about “A Life Reexamined.” He recalled how when he was in the throes of REM sleep behavior disorder (RBD) and terrible hallucinations, he wanted to give up and die, but he believes that God told him that He was not done with him yet. Robert talked about how he tries to share the principles that guided him before Lewy: Love, care, education, encouragement, and hope. And he talked about his acronym ASAP: Acceptance, Socialization, Attitude, and Purpose. I encourage you to read more about Robert, his life with Lewy, and his work. His video is worth watching too. You can see a video of Robert at https://www.youtube.com/watch?v=swY9zTsySKA
See also http://dementiajourney.org/tag/dementia-action-alliance/ and https://www.lbdlivingbeyonddiagnosis.com/index.html

It is my honor to serve with Robert Bowles on the Living with Lewy Advisory Council which is largely the result of his persistence in advocating for such an entity.



Josh and Emily Ohde talked about their ongoing support for Josh’s father, Larry, who has LBD. Josh’s mom died, so his dad’s care fell to him and his wife, Emily. They relocated Larry with them from Kentucky to Rochester, Minnesota. Larry lives in a long-term care facility only a few minutes from where Josh and Emily live, so they spend time with him every day, often taking him out to explore their new environment. Their presentation highlighted how family members can continue to be very active care partners and advocates for their loved ones with LBD when the person is an LTC facility.

Our next blog will describe an experimental drug we learned about at the conference.


For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, August 16, 2019

2019 International LBD Conference: Susan Schneider Williams


The Caregiver Track of the conference highlighted people living with LBD and their experiences. This week, our guest blogger, Rosemary Dawson, tells us about one of these speakers.

Susan Schneider Williams, Robin Williams’ widow and probably the country's most high-profile LBD advocate, did an exceptional job during the welcome and round table. Her level of knowledge, amount of self-disclosure, vulnerability, and ability to articulate important points provided standout moments. Susan shared information about her Lewy journey with Robin that I hadn’t seen disclosed before.

Despite their wealth and number of specialists, they experienced what so many of us have been through. Increasing symptoms, no diagnosis, incorrect diagnoses, and incomplete diagnosis (PD). Robin never knew that he had LBD because it was only upon autopsy that they discovered what one LBD specialist described as the worst case of LBD he had ever seen as well as signs of Alzheimers. Mixed dementia is very common, but as with Robin, often not discovered until autopsy.

Also, in retrospect, it is apparent that Robin experienced many of the classic LBD symptoms: short term memory loss (inability to memorize his lines for his last film), hallucinations, paranoia, anxiety, parkinsonism, withdrawal, loss of executive functions, and more. He knew something was wrong and wanted to re-boot his brain. Because of his previous experiences with substance abuse and depression, some doctors misinterpreted his symptoms and prescribed drugs that can have adverse effects on people living with LBD. Although he had been drug-free for many years, he returned to a 12-step rehab program to see if the strategies there might help with his current condition. It didn’t.

After Robin Williams died in 2014, Susan set out to raise awareness about this little known yet devastating brain disease by telling about his exhaustive battle with LBD.
https://www.americanbrainfoundation.org/about-us/governance/susan-schneider-williams-bfa/
As spokesperson for Lewy Body Dementia, she is committed to raising awareness for brain disease. She has appeared on many talk shows and serves as the Vice Chair on the board of directors for the American Brain Foundation. In 2016, she moderated a 2016 Forbes Healthcare Summit panel, authored an editorial for Neurology, the journal of the American Academy of Neurology and received the American Brain Foundation's Commitment to Cures Award. Her Neurology editorial for “The Terrorist Inside my Husband’s Brain” is required reading in many medical schools and has been downloaded millions of times. You can read it at https://n.neurology.org/content/87/13/1308

Robin's Wish is a timely and urgent biographical documentary of the much beloved Robin Williams that weaves together the untold love story of his third marriage, his untimely suicide, his unknown illness and his universal experience moving through pain in the search for healing and joy. You can see excerpts from the film and read a full description here. (Note: the description calls Robin's disease rare. We know that although it is often unrecognized, it is far from rare! With 1.4 million people in the US alone, it is not rare. Rare is 20,000 or fewer.
https://www.documentaries.org/robins-wish

This film will have a first showing as a fund raiser in New York on July 17th. After that, Susan is not yet sure how it is going to be distributed - likely online - perhaps, iTunes, Amazon, or Netflix. https://lewybodyresourcecenter.org/robins-wish-lincoln-center/




Susan is opening a topic of discussion that needs more light shed on it: suicide. Lewy bodies can destroy the parts of the brain that control rational thought and decision making, and some drugs prescribed for the symptoms of LBD can cause suicidal ideation, suicidal behavior, and suicide-related events. I hope that Robin’s Wish provides a good understanding of these potential causes of suicide.


For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, August 9, 2019

2019 International LBD Conference: Patient/Care Partner Track

This week's blog is about presentations in the Patient and Care Partner Track of the 2019 International LBD Conference that we attended recently in Las Vegas.

Several people living with early stage Lewy talked about their experiences, with an emphasis on the fact that although they have the disease, they are still the same person, albeit with more limited abilities. This loss of abilities has led to their need to find other ways to feel usefull. Family members, including Robin William's wife and Ted Turner's daughter, talked about their experiences and their loved one's journeys. In future blogs, Rosemary Dawson will be telling about these interesting speakers. Today's blog is a summary of some of the other presentations. I will cover several of the topics much more thoroughly in future blogs.

Partnering with your Medical Team. Dr. Melissa Armstrong, Florida, presented methods for partnering with your medical team. Her main points: a) know yourself and your loved one, b) help your team get to know you, c) identify your team, d) partner with them, and e) continually reassess.

Dealing with Fluctuations an Hallucinations by Tanis Ferman, a  pioneer in LBD-related behavior management. Highlights were a discussion of what fluctuations and hallucinations are and aren't, why hallucinations occur, their connection to emotions, and some management suggestions. Along these same lines, Dr. Boeve, another LBD pioneer, talked about Coping with RBD but didn't provide any literature.

Evidence based Strategies for Supporting Care at Home by Laura Gitlin, Dean of College of Nursing and Health Professions, Drexel University. Laura advocated changing the cycle of care from an unhelpful one with little care or patient/caregiver input to a more hopeful one, with patient and care partner participation.

Four Pillars of LBD Care and Empowerment, by our own LBDA staff member, Angela Taylor. The pillars are 1. Advance preparation, 2. Use outside resources, 3. Care for yourself, and 4. Leverage your experience.

Non‐drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Symptoms by Rosemary Dawson and the Whitworths (yes, us!). Although Dr. Ferman talked about hallucinations and Dr. Boeve talked about RBD, our poster was the only other presentation specifically about dealing with behavioral symptoms. We identified dementia-related behaviors and listed a variety of non-drug therapies. It is quite thorough and can be accessed via our website and used by group facilitators or others who want to spread the word about dealing with these bothersome symptoms with fewer drugs.

End of Life and Use of Hospice Care in Patients with Dementia with Lewy Bodies. Briana Arman, Cleveland U.. Briana's poser showed that while hospice was often utilized, it was seldom for more than a few days or weeks. While new regulations have made it difficult for someone with only dementia to go on hospice, people living with LBD usually have other physical conditions that would help them qualify. However too many people still believe that hospice is only for the final days.

Staying Connected and Living Well with LBD, by Allison Killen. The founder of the Lewy Body Society in the UK presented this as being informed, focuses on the positive and involved and discussed various aspects of this.

Thriving Through Singing, by Mary Lenard. The co-founder of Giving Voice talked about how singing, especially in groups, fosters well being, purpose, community and understanding. Her group inspires and equips organizations to bring together people living with dementia and their care partners to sing.

Finally, a few other bits of information we picked up:

A Canadian poster pointed out the importance of social media for support for those in rural areas, and especially for those dealing with early onset dementia. (Or I'd suspect, any kind of rare diseases where even in an urban setting, specific support groups would be limited.)

We found it interesting that researchers discovered no significant evidence of age-related decline in adults over 60 without LBD. For researchers, this is of concern due to possible over-correction for "age." For the rest of us, it means that we can't claim "senior moments" as easily...and that they are more likely evidence of early MCI! (But also, let me remind you, of stress.)

Microbleeds (small chronic brain hemorrhages) in patients with DLB were related to high blood pressure but not DLB or AD. (We wondered if they were related to vascular dementia?) They were associated with less severe attention, visuospatial dysfunction and less parkinsonism.

The next blog: More conference information.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.